I love the Produadopa/Vyalev pump – no question. It has made a huge change to my life and I am a strong advocate, but it is absolutely not a magic bullet, and I have seen a number of people really struggle with it. It is time in my view to present my view as it stands today … many people have asked and I feel it important to promote a fair and balanced discussion about it. My current verdict.….
Of course I am not a scientist, not a researcher and seemingly some of this community seems less than keen to hear from patients (many others are) but the pump is big news and lots of people are asking. My view is totally subjective and for all I know may change tomorrow morning. It is my blog, and this is my space, so you need to accept that if you want to read on.
I will share my personal experience followed by some of the things I hear from others…
My experience
I must disclose that my experience is complex to measure because of a significant personal stress experience situation right in the middle. I am not going to go into it because it is not anyone else’s business (to be frank) but it is relevant to the results of the pump so please bear it in mind. I think it is starting to settle back down thankfully. I have conjured up the graph below to explain my story.
I have chosen to use a self-assessment using the PRO-PD App which offers a way of scoring the PD impact of Quality of Life through an assessment of 33 symptoms spearheaded by Dr. Laurie Mischley (who I don’t know but other people I have come to respect have spoken highly of her) – see a link to the app and to some related research link.
The specific tool is not relevant, but the chart shows my journey as I personally see it.
- A: This is my view of the score immediately prior to the pump – using a cane, shuffling, major balance issues, freezing, no smell, little sleep, limited tremor, rigidity, terrible handwriting, depressed etc. My neurologist agrees that my progression was very fast for its elapsed time.
- B: My view of my state post pump – a massive improvement to freezing, balance and shuffling, off the cane, much improved mood, reduction to the tremor but little/no impact to the sleep, smell or handwriting. There were a few moments when I put myself in difficult/stressful situations where I had spikes which I have written about.
- C: I had a major abnormal dose of stress and it has had an impact on my PD which I have been measuring in real time using the app. Balance has got worse and I have fallen/frozen. The cane has come back. It has seen a decline in the PD. Additionally, totally subjectively at the top of the chart is my view of what could have happened if the stress point occurred when I was in the state I was in when off the pump. Who knows if this is real but it intuitively makes sense.
- D: I think and can feel some reduction of the impact (not yet completely measurable) from taking action to the stress point and also an increase in the dose of the pump from 0.41 to 0.43 ml/hour. The cane is still with me but more for precaution.
- E: This is my goal by doubling down on dealing with the past crisis which still more than lingers, doubling down on exercise, positive thinking etc. but it is in the future. Clearly it will rise i the future as PD increases but for now this is the current trend.
My conclusions from this for my story
The pump is working amazingly for me and the absolutely massive difference on the scale is just an indicator.
However, I must note that in the period I have also seen that:
- It has caused me a significant stomach infection once and a number of painful moments/days as the cannula sometimes hurts.
- It is not so straightforward to carry around, transport, supply, sleep with etc.
- It has failed at a few moments of acute stress which I have written about – it is not foolproof to the spikes of PD.
- It has possibly caused a current side effect of swelling in my lower legs (type of edema). It is listed as one of the main potential side effects and although there may be other causes it is under check at the moment but hopefully will recede.
Overall for me – awesome but bumps – I wouldn’t give it up almost whatever. However, the truth for all of us is that times don’t stop and that life and PD test us and fluctuate and no medical device is perfect when dealing with a beast like PD.
Other stories
Many of the people on the pump who I have spoken to feel the same or similar but there are other voices:
- People the pump doesn’t take for: I know of at least two people who have had bad reactions to it in the process of starting it – significant negative reactions – and they have pulled out. So, it clearly doesn’t take for everyone (and I am unqualified to comment on their specifics) but they tried and it didn’t work.
- The stomach issue: A number of people really report significant impact to the stomach area – calluses, infections, pain. Some have started to search for other areas on the body to use the pump. It is clearly invasive and for some significantly so.
- The DBS question: I don’t know what the consensus is but there is clearly a debate with the use of the pump alongside having or planning to have DBS. This seems an ongoing question.
- The equipment: Clearly it requires daily care and preparation of syringes and injection of a micro needle every two days for most of us. It is bulky and can’t go in the swimming pool and is probably hard if a professional football player to wear so it is not perfect.
So…My current verdict it is far from perfect. I have actually written to the manufacturer on behalf of other users on seeing if we can get guidance on the stomach care issue.
For me, 10 weeks in – it is an absolute game changer and I wouldn’t for a second go back. I still have PD, it is not a cure, it still spikes and at the end of the day the underlying disease for me is an aggressive one so I know it will move and is just being masked – but I vote very strongly in favor and i’m hugely grateful to those who put the efforts into the developing it
